Summarizing activity limitations in children with chronic illnesses living in the community: a measurement study of scales using supplemented interRAI items

Abstract

BackgroundTo test the validity and reliability of scales intended to measure activity limitations faced by children with chronic illnesses living in the community. The scales were based on information provided by caregivers to service program personnel almost exclusively trained as social workers. The items used to measure activity limitations were interRAI items supplemented so that they were more applicable to activity limitations in children with chronic illnesses. In addition, these analyses may shed light on the possibility of gathering functional information that can span the life course as well as spanning different care settings.MethodsAnalyses included testing the internal consistency, predictive, concurrent, discriminant and construct validity of two activity limitation scales. The scales were developed using assessment data gathered in the United States of America (USA) from over 2,700 assessments of children aged 4 to 20 receiving Medicaid Early and Periodic Screening, Diagnostic and Treatment (EPSDT) services, specifically Personal Care Services to assist children in overcoming activity limitations. The Medicaid program in the USA pays for health care services provided to children in low-income households. Data were collected in a single, large state in the southwestern USA in late 2008 and early 2009. A similar sample of children was assessed in 2010, and the analyses were replicated using this sample.ResultsThe two scales exhibited excellent internal consistency. Evidence on the concurrent, predictive, discriminant, and construct validity of the proposed scales was strong. Quite importantly, scale scores were not correlated with (confounded with) a child's developmental stage or age. The results for these scales and items were consistent across the two independent samples.ConclusionsUnpaid caregivers, usually parents, can provide assessors lacking either medical or nursing training with reliable and valid information on the activity limitations of children. One can summarize these data in scales that are both internally consistent and valid. Researchers and clinicians can use supplemented interRAI items to provide guidance for professionals and programs serving children, as well as older persons. This research emphasizes the importance of developing medical information systems that allow one to integrate information not only across care settings but also across an individual's life course.

Direct and indirect forms of childhood maltreatment and nonsuicidal self-injury among clinically-referred children and youth

“…The ChYMH builds a comprehensive picture of individuals' mental health needs, over all functioning, and areas of risk to inform care planning for clients. Rigorous reliability and validity studies have been conducted across the family of interRAI instruments, displaying strong psychometric properties for adults (Burrows et al, 2000;Martin et al, 2007;Morris et al, 2000., Perlman and, as well as children and youth (e.g., Phillips et al, 2012;Phillips and Hawes, 2015). Inter-rater reliability of the interRAI instruments were assessed and the average agreement was 83% for all interRAI mental health items (Hirdes et al, 2003;Hirdes et al, 2008).…”

The role of adverse childhood experiences as determinants of non-suicidal self-injury among children and adolescents referred to community and inpatient mental health settings

“…Numerous studies have found items and scales embedded in the ChYMH to have strong psychometric properties (Phillips et al, 2012;Phillips & Hawes, 2015;Stewart, Currie, Arbeau, Leschied, & Kerry, 2015;Stewart & Hamza, 2017). The sample analyzed in this study consisted of 2038 children and adolescents aged 8-18 years (M = 12.49; SD = 2.88).…”

Validated instruments for children and adolescents with chronic disease: an integrative review

“…Exampling a build of generic questionnaire, a study [19] exposed to physical limitations as a general factor for several chronic diseases and concluded that the information collected from the professionals and caregivers constitute a solid foundation for building an individualized treatment plan with a view to improve the health of children, in view of the limitations of each, plus the ability to integrate health information throughout the course of life of these patients.…”

“…The synthesis build of the selected studies in the review show that the motivation to develop an instrument or quiz in the theme of chronical is strictly linked to factors, as: handling of a specific disease such as diabetes [6,7,8], sickle cell anemia [9,10], asthma [7,11,12], chronic kidney disease [13], Cystic fibrosis [14]; children and/or adolescents family inclusion in the validation process or as subject of the instrument application [6,10,15,16,17]; measurement of subjective dimensions of life experience with chronic disease such as: quality of life [7,13], satisfaction with care [17], chronic pain experience [18] as well as the limitations to develop common activities [19]. The use of statistical measures as tools to support the validity, reliability and reproducibility of instruments built was present in all studies.…”